Accepting the love of others

Last week I was beginning to feel overwhelmed. 

The baby will be here in a few short weeks, Christmas is around the corner with shopping, wrapping and decorating still needing completed in our house.  My lower back and carpal tunnel syndrome have been creating significant pain and physical discomfort for me lately, keeping me from having a peaceful night's sleep in quite some time.  Because of my back, Dustin has been transporting Matthew to and from the sitter pretty regularly and I've been noticing that Matthew has been choosing Dustin over me for playtime, comfort, kisses, etc. and while I've been grateful that Matthew has a father who loves him and that he can count on, I have to admit that it's made me feel a bit left out. 

There was a short span of a few days last week where I felt pretty down in the dumps and really questioned if God had chosen the "right" mother to be our new baby's caregiver?  Do I have it in me to learn all that will be required?  Will I be the best advocate?  How on earth will I manage therapy, more specialists and learning how to care for our new baby in addition to my already lengthy list of to-do's?  I thought on it for a few days and had really been struggling with my level of confidence in myself. 

Thursday evening, I was reminded that we're not in "this" alone.  A couple who are long time friends of ours called the night before to see if we'd be home as they had something to drop off.  We were looking forward to seeing them as it had been a while since we'd had a chance to visit.  When Thursday evening rolled around, we learned that our friend had submitted our names and story to become beneficiaries of a fundraiser organized by she and her co-workers every year... we were selected as one of six families to receive a more than generous monetary gift to help us offset our upcoming expenses related to baby's condition.  We were humbled, touched and grateful.  We hope to be staying in Cleveland, either at Ronald McDonald House or if they are full, a local hotel to be near baby while he is in the NICU and their gift should really help us to manage that expense much easier. 

After a bit of reflection, I was reminded that we are not in "this" alone.  The love of Christ has constantly been shared with us through family, friends and even through the generous hearts of people we've never even met, just like from my friend's co-workers at Weaver Leather. 

Love and support is all around, we just have to be open to accepting it!

36 Weeks and Counting

Today I had my last appointment with our cardiologist before we see her again following baby's arrival.  She had some pretty awesome news for us!  No, the heart defect hasn't miraculously corrected itself, but this may have been the next best thing!  We've learned over the last few months that baby's heart has a mild imbalance, which had been potentially putting him at risk of eventually needing a single ventricle repair - a less than ideal fix.  Also, there has been a slight regurgitation with one of his valves, not something that we've been overly concerned about, but have been monitoring nonetheless.  Both of these issues looked much better today!  While his heart is still presenting some imbalance, it's evened out some.. to the point that a two ventricle repair should be feasible and the regurgitation was not visible during today's echo!  Wonderful news!

Following the echo, I had an appointment with our perinatologist.  Today, we completed another ultrasound and we learned that the baby has gained almost 2 pounds since our previous ultrasound a month ago, with him now having an estimated weight of 5 pounds, 8 ounces!  This should put him on track to weigh between 6.5 and 7 pounds at birth! 

Lessons Learned from a Twin

My baby brother is an almost senior at Ashland University.  Tonight he brought a friend from school to visit with us whose twin brother has Down Syndrome.  This guy was was awesome!  He shared how growing up with his brother taught him some wonderful qualities (as I expected), like acceptance, to not judging others, the value of respecting people for their differences, etc. etc.  He also shared that they are 23 years old and that following high school his brother completed a post-secondary college program that taught trade skills and that he has two jobs now, one at Taco Bell (which he loves because he gets to interact with people) and also at a workshop where he helps to make wooden benches.  He told me how his brother loves having a routine and helps out a lot around the house, cleaning and making some of his own meals... his favorite food to cook is omelets!  He also told us about a special olympics type of program called "challenger" in the Massilon / Canton area where he spent a lot of time growing up playing baseball and basketball (he also had AV Canal and the amount of exertion required for the challenger activites was appropriate based upon his heart) and how he's a huge Browns fan now.  I was interested in any tips he'd have for us in raising our other son, Matthew and pretty much, he just suggested that we treat them both the same and bring Matthew up to love, care for and protect his brother.. all things we would have done anyways.  He had such an amazing love for his brother  and it was really encouraging and uplifting to learn about their lives!

Hiccups

I'm 33 1/2 weeks pregnant and yesterday morning, baby had hiccups for the first time! I felt them on the upper right side of my belly and they lasted for maybe around 3 minutes! I know that Matthew had them some towards the end, but I don't really remember any of it, so its pretty special to be experiencing it again!!

Baby, You Are Loved

Dear Baby Luke:

A couple of nights ago, your brother was visiting with your Grammie Dawn while your dad and I were at a wedding reception.  When I went to pick him up afterwards, your Grandma shared a pamphlet with me that a neighbor had given her from the National Down Syndrome Society advertising an annual calendar they publish.  The brochure had pictures of babies with Down syndrome on it.  I managed to hold Matthew on my lap, even though my belly has grown large enough now that there is barely room for all three of us in one chair!  As I looked through each of the pages within the brochure, I was so touched as I watched your big brother unexpectedly bend over and offer kisses to the babies on the pages.  He also kept repeating his version of the word baby, which currently comes out as "bay-be".  The acceptance and love he already has for you was so heartwarming for me as I contemplate my future of being a mom to two boys.  I hope he is always able to maintain his love for others, especially for you, his baby brother!  As the two of you grow and learn from each other over the years, I will pray that you are able to build and nurture a special relationship that lasts a lifetime.

I'll love you forever,
Mom

Blessings Abound

A few days ago we had a follow-up with our Peri, the baby's cardiologist and we also met his cardiac surgeon.  Baby wasn't positioned well and we didn't get a print out of the 3D ultrasound, although we were able to see a few views of his face on the monitor and Dustin was pretty convinced that baby looks a lot like his big brother Matthew! 

As has become typical with our experiences with the Cleveland Clinic, our doctors have always been kind, knowledgeable and confident and we continue to learn more about baby's condition and become more prepared for his arrival.  That said, with each visit, God has always put someone in place for us to meet and uplift us during our experience.  This time it was a family with a 5 1/2 month old son who has the same heart defect (although his seems to be more complex than we think we are facing at this point) and who also has Down syndrome.  The baby was gorgeous and his parents were equally as amazing... mom was beautiful, put together and composed and dad was holding the baby, reassuring him that he was going to be okay, although his breathing sounded congested.  In my first few seconds of observing this other young family, I was so incredibly encouraged that we might be okay too.  I desperately wanted to talk to them, but even my generally talkative self was at a loss for words.  What do you say?  I whispered to Dustin at least 10 times, "I want to talk to her, what should I say?"  As usual, he rescued me by looking up at the mom and calmly asking her if her baby had a heart defect?  She was really sweet and responded with yes, it was AV Canal (and then she included a chain of acronyms and diagnosis laden words that haven't become a part of my vocabulary yet) and we talked a bit about his surgery, which had been completed 2 weeks earlier at Boston Children's Hospital.  Then she was called back by the nurse and I was saddened that she had to leave.  Such a wealth of knowledge and experience and someone who was close to my age, with a baby, also close in age to our son due in just a few weeks.... I was completely shocked when a few minutes later, she returned to the waiting room to deliver a piece of paper with her name, phone number and email address for us.  She said she'd love to talk sometime and encouraged us to reach out to her.  I emailed her last night and we exchanged a few messages today.  What a blessing for us to have connected to someone who has offered me such an amazing vision of hope!  She and I have also connected on facebook and it's pretty awesome to follow their path.  Blessings abound for our family (and their's too), we just have to be open to accepting them!

32 Weeks - Update

Tomorrow we travel yet again to the Cleveland Clinic for another fetal echocardiogram, an appointment with our perinatologist (and a 3D ultrasound!!) and also a meeting with the baby's heart surgeon. 

During our last fetal echocardiogram, the doctor noticed that the baby had a small leak associated with one of his heart valves.  She also reminded us that his heart has a mild unbalance, with one side (possibly the right) being larger than the left.  In addition to the holes associated with the CAVC, I'm anxious to learn if either of ant of these issues has gotten worse (or possibly better ?).

My only real questions for the perinatologist center around the baby's perceived low weight (last we knew, he was in the 17th percentile) and what I can do to help him gain?  Also, my regular OB doctor suggested that we'll likely be beginning weekly surveillance to monitor his heart and blood flow.  Lastly, I'm interested to know if my c-section has officially been scheduled?

For the doctor set to complete baby's heart surgery, I've found the following questions on the internet to cover during our consultation tomorrow:

Questions about the surgery itself:

1. What symptoms make this surgery advisable?
2. What will likely happen if the operation is not done?
3. How will the operation improve health or quality of life?
4. Are there any common complications after the operation?
5. Who will be the patient's cardiologist at (name of hospital) ?
6. How long does the surgery usually take?
7. What's the average length of hospital stay?
8. What kind of follow-up is expected after the procedure?
9. What type of long-term follow-up does one need in the years after surgery (i.e. doctor visits, echos, EKGs, etc.)?
10. Are there any restrictions in lifestyle post-surgery? Weight lifting, high impact sports, or sports of any kind?
11. How do we go about setting up a consultation appointment with the Surgeon?
12. Will the patient need to accompany us to the consultation?
13. Is this a teaching hospital?
14. Who will be doing the surgery? How many surgeons will be in the room?

*** -Note- *** At most teaching hospitals, the senior residents can do all, or a significant part, of the surgery. If you want to be sure that a particular surgeon does the operation, make sure you have it placed in writing in your chart that Dr. (name of surgeon) is to be your primary surgeon.
  Questions about the surgeon & rate of success:

1. How many (name of surgery) have you done? On adults? On children? On infants under the age of 1? (depending on your particular situation)
2. What has been your success rate? Do you know about long-term success rates?
3. What area do you specialize in? Adult, child, or infant cardiothoracic surgery?
4. How many total heart surgery procedures are done at your hospital each year?
5. What is the overall mortality rate at your hospital?
6. What type of certification do you have? Board certified? Approved by the American Board of Specialties? Fellow of the American College of Surgeons (F.A.C.S.)?

Other Questions Regarding Pre-Op and Post-Op Care:

1. Can parents accompany child to the operating room until they are asleep and can they be in the recovery room when the child awakes?
2. What is 'Plan B' if the surgery cannot be performed for some reason?
3. What would have to happen for you to revert to 'Plan B'?
4. What do you do for blood transfusions - do you take donor blood before surgery? Can family members donate?
5. What type of materials are you going to use (Gore-Tex, human, porcine (for valves), mechanical (for valves) or other)?
6. What will you do for nausea - will you give medication to treat it? How liberally?
7. What will you give for pain meds? How liberally?
8. What kinds of post-op medication will you have the patient on (e.g. aspirin, blood thinner, blood pressure med, etc.)? For life, or approximately how long?